undiagnosed with low rbc,wbc,platlets

[tom30]

I've seeing a hematologist for 2 years, my counts aren't that low, wbc 2.5-3, rbc 3.8-4, plt 75-90, mvc 98-99. They bounce around that range. Doc did 2 BM Biopsy's and there are no blasts. He thinks its MDS, my question is... has anyone seen this type of progression for MDS? Thank you

[Dick S]

Originally Posted by tom30

I've seeing a hematologist for 2 years, my counts aren't that low, wbc 2.5-3, rbc 3.8-4, plt 75-90, mvc 98-99. They bounce around that range. Doc did 2 BM Biopsy's and there are no blasts. He thinks its MDS, my question is... has anyone seen this type of progression for MDS? Thank you

Yes, I have the same type, but mine has been diagnosed as MDS RCMD. Been watching my counts go slowly ever so slowly down for four years as the bone marrow weakens. I've been on a "watch and wait" list and so far have received no treatment. It's the waiting part that kills me.
Are you showing any tiredness or fatique yet? I certainly have, but everbody is different.

[tom30]

I do not have any fatigue, my numbers actually got somewhat better HGB was 12 now 14, wbc was as low as 2.2 but now runs around 3, rbc as low as 3.3 now runs close to 4 or above, plts were 71 now are usually 80-90. With that said did the doc say you had MDS when you had no blasts or were they there from the start for you?
Thanks

[Dick S]

Originally Posted by tom30

I do not have any fatigue, my numbers actually got somewhat better HGB was 12 now 14, wbc was as low as 2.2 but now runs around 3, rbc as low as 3.3 now runs close to 4 or above, plts were 71 now are usually 80-90. With that said did the doc say you had MDS when you had no blasts or were they there from the start for you?
Thanks

Read my tag line, at last BMB blast were at 4%. MDS is not just a case of whether you have blast or not, there are other factors. The MD in my RCMD stands for multi-lineage dysplasia, in other words all lines are down, reds, whites, plt, as well as HGB and HCT.

[LynnI]

Hi Tom,

I too have RCMD, however my whites and platelets have been stable, they know that they are funky. I started out with no blasts but after 2 yrs I now have 3%. It was my hemoglobins that were greatly effected but they are now stable with meds. I was bad enough to be getting regular blood transfusions. This disease is so different for most of us even with the same classification.
I would suggest going to a Centre of Excellence for MDS, these places are at the fore front of our disease, even if it for a second opinion.
Good luck.

[tom30]

Hi Lynn, Thanks for the response,I hope you continue to stay stable. I checked and the doctors I'm going to are in that Centre of Excellence for MDS program. I didn't know that before but it makes sense. The doctor I'm seeing has a clinical expertise in mds and I kinda thought it was odd for him to suggest mds after my first BMB. I have a history with some autoimmune issues that went away and had a low B12 count when I first saw the low CBC counts. I'm still hopeful that it is an auto immune issue that resolves itself and since the doctor has not made a call of MDS I'm keeping my fingers crossed. Knowing that they can make a call of mds without blasts is helpful. thanks again.

[Dick S]

Tom, my hema/onc also made the call for MDS before my first BMB even though peripheral blood showed no blasts. The blast slowly developed latter.

[tom30]

Dick, thanks for the clarification, there must be something that my doctor is not seeing in order to call it mds.

[m mindas]

Tom
Get a copy of your bone marrow biopsy and you will be able to see for yourself why they want to call it MDS. My doc told me I had MDS-"By default. Because it can't be anything else". I was "unclassified".
I was treated for Aplastic Anemia first. If you have no blasts-that's great. But, Dysplasia means that the cells are looking funky and it is up to the pathologist viewing your slides to make that call. It can be a subjective call-if you are without any chromosomal abnormalities or blasts.
Also, make sure you get all of the genetic blood tests to rule everything else out in case there is some latent disease coming out now.
Now I am not able to make any rbc or platelets and am t/f dependent. I was told that "It doesn't matter what you call it-It is Bone Marrow failure. Your body can't make any blood products".
I am due for my Stem Cell Transplant next week. I hope your counts recover as you have said. I understand your need to have a clear diagnosis. I wanted to join somebody's team, too.
My advice now is to watch your blood counts and don't get caught up too much in a label.

[tytd]

Hello Marian,
We will be thinking about you during your transplant process and wish you an easy and successful course. Keep us forum members posted if you can. Good Luck Marie

[tom30]

Hi Marian, I wish you well with the transplant.. Your post was very helpful, I reviewed my BMBs and do not see thing with Dysplasia as part of the word, also I know the doc did cytogenetics testing a few times and nothing was wrong there, I'm thinking that chromosomal abnormalities would show up there. Thank you again and I hope the transplant goes well for you.

[Lisa Z]

My counts fell very slowly over about a 9 month period. My hematologist didn't know what to make of it after doing 2 BMB. She eventually got me in to see Dr. Young at the NIH. He didn't know at first either, but ultimately I was diagnosed with AA, but then they changed it to MDS. Sometimes it is a very slowly evolving disease; so if your dr. isn't too concerned at this point, just be hopeful that your counts stay where they are and take it from there.

[tom30]

Liza, Thank you for your note, I first noticed the CBC being off in the fall of 08 and started seeing a hematologist in Dec08 but I believe my counts were off for at least a year before that because I was bruising a lot and was just ignoring it. So I'm hopeful and I'm glad he didn't make a call yet. But I do want to find out more about MDS in the mean time.

[gipper]

Hi Tom,

I expect you're aware that a diagnosis of MDS is a diagnosis of exclusion. There simply isn't a single test that confirms that a patient has MDS. Your doctor has to make the call based on all the evidence. I've only had two bone marrow biopsies - one in 9/04 and another in 3/09. In the first report the pathologist wrote conditions such as myelodysplasia or myeloproliferative disorders cannot be ruled in or out. However, my hematologist made the call of MDS and it wasn't long before I started receiving transfusions of red blood cells. Both of the biopsies found normal blasts and cytogenics - initial blast count was 2% and second 4% (5% or less is normal). While those features are good prognosis-wise, my age and current HGB and platelet counts are unfavorable. MD Anderson, one of the associated centers of excellence modified the IPSS scoring system to include the features previously mentioned. Here's the link:

http://www.mdanderson.org/patient-an...ome/index.html

Bill F

[tom30]

Hi Bill, thank you for the information and link, I have my next appt this thursday, just blood work. It seems to me the doctor is still hunting around for a cause most of the blood work he is requesting this time from the immunochemistry section of the blood work request. I wish you well.

[tom30]

Hi, I was at the doctors today, blood work was in line with what I've been seeing for the last 2 yrs. WBC 2.6 last 5 readings july was- 3, 3.1, 3.1,2.7, jan was- 2.5---- RBC 4.0 last 5 readings 3.7, 3.9,4.1,4.0,4.1---- PLT 78, last 5 readings 80,87,86,90,78 HGB was 14.5 and MCV was 100. The doctor said he thinks it may develop into MDS but the numbers don't warrant treatment even if he had other factors that pointed to MDS. He said he would suggest another bmb a yr from the last one, that would be next april and continue the every 2 month visits. I'm glad that he doesn't have enough confidence to make the call at this time and hope what ever is causing my low numbers either stays stable or gets better. Does anyone have any ideas on what can be done diet wise to help the bone marrow? Maybe someone had a similar numbers?

[tom30]

Got my additional blood results back nothing out of the ordinary. Had time over the last few days to read a lot on this forum and do some research, what a nightmare MDS is and any other blood disorder for that matter that affects the blood counts. My counts are trending sideways right now, can't really figure out if they drop off suddenly or what the time frame for MDS's progression is. I asked for all of my test results and found a hand written section where Myeloblasts are .5, it also said normal male karyotype. I had a run in with eosinophilic facsitiis 5 years ago and that is associated with a host of blood disorders. This board has a lot of good information on it, but it is a lot figure out. I asked the doctor if i could try prednisone(figuring it knocked down the EF 5 yrs ago and is used for mds) but he said it might mask whats going on. I hope this isn't a train wreck in slow motion.

[RoboDad]

Have your DR's test for lyme disease (western blot and igenex) as well as for heavy metal toxicity. Just a hunch.

[Sally C]

Hey RoboDad,
As someone who has had Lyme disease twice, and fortunately it was caught early, you are correct that it can manifest itself in many unusual ways. And it is more prevalent than people realize.
As for testing, my doctor told me it's a reactive test. In other words you could have it and still have the test come out negative. We went by the fact that I had been bitten and also my symtoms. The only symptom I didn't have was the characteristic "bulls eye" so one doesn't always have that when they have Lyme disease. I am always suspect of Lyme when I hear of people having weird symptoms with no easy explanation.
Sally